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Author
Topic: 22 years now with full blown AIDS (Read 10979 times)

I tested positive in 1992 after testing negative six months before and when I tested positive my T4 was 32, indicating full blown AIDS. They gave me 3-5 years to live. They put me on AZT, which a week later I rejected and there began a long line of experimental drugs up until today with the state-of-the-art more powerful drugs. It is now 22 years later and I am still here with a T4 around 300, stable, and have had no infections. I have explained it for myself that I had the virus a long time before it was indicated in the testing, since back in 1992 testing was still not all that completely accurate. Is there anybody else out there who has lived this long with full-blown AIDS?

welcome to the forums. You'll find there are a lot of us around these forums whom outlived expectations. I tested poz 28 years ago and advanced to AIDS in 1989. 24 years old and dying of AIDS seems like a lifetime ago.

Hope to hear more from you, and hope you develop the same types of relationships with the great people here that I have.

best wisheswolfie

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Complacency is the enemy. Challenge yourself daily for maximum return on investment.

I don't consider it full blown AIDS, just a shitty CD4 count. Diagnosed Feb 14 2003, sixty-ish CD4. Best count since then, 234. That was a good month. Usually in the mid 180's. Healthy as a horse otherwise.

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Life is short, Break the rules, Forgive quickly,Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

Nice to hear from all of you. Ok, here is my next complication. In 2011, I was diagnosed with Parkinson's. I have a sixty three degree curve in my spine to the right and so my posture is off side. But I have relatively little pain and walk two miles daily, live in assisted living, and do artwork daily. I have read that having AIDS predisposes you to Parkinson's. Anybody have thoughts on all of this?

THEY USE TO SAY THAT ANYBODY WHO HAD LESS THAN 500 CELL CT HAD FULL BLOWN AIDS.I TESTED POSITIVE IN 1988 AND HAVE NOW HAD A RECENT LAB WHICH HAS INDICATED THE HIGHEST CT I HAVE EVER HAD IN THE PAST 24 YRS AT 402.I USE TO GET SO FRUSTRATED THAT AMONG ALL MY FRIENDS ,I ALWAYS HAD THE LOWEST CT EVEN THOUGH WE WERE ON THE SAME MEDS!!!THIS IS NOW 2014 AND I AM THE ONLY ONE STILL ALIVE.I HAVE OFTEN WONDERED IF MAYBE THIS WAS GOD"S WAY OF PUNISHING ME !!!.....PLEASE EXCUSE ALL THE CAPS!!!

To all those oldies - keep going strong. Their is life after being diagnosed HIV pos - You have all shown us it can be done. Thanks for encouragement and for all the positive stories - I know that there are many many sad stories as well, but we all will conquer.

I might add also that at my last complete physical examination with my doctor, he said that looking at the big picture considering all my test results and having two incurable diseases (Parkinson's and AIDS) "You are healthier now than you have ever been since testing positive."

Deny the Disease. Do not give it entrance. Tell it to get out. You are as healthy as you think.

Isn't the definition of full blown AIDS still "below 200 T4"? I was under the assumption that it was not an arbitrary call. That it was specifically defined.

I've never heard a doctor use the term "full blown AIDS" -- I've only heard it on Family Guy or some TV show, or on a web forum, or someone gossiping in a gay bar. I don't think it's really an actual clinical term.

When I was <200 cd4 count I didn't have an opportunistic infections. Yes, technically by CDC definitions I had AIDS but there wasn't anything "full blown" about it. Does that mean I was "half blown"?

I tested positive in 1992 after testing negative six months before and when I tested positive my T4 was 32, indicating full blown AIDS. They gave me 3-5 years to live. They put me on AZT, which a week later I rejected and there began a long line of experimental drugs up until today with the state-of-the-art more powerful drugs. It is now 22 years later and I am still here with a T4 around 300, stable, and have had no infections. I have explained it for myself that I had the virus a long time before it was indicated in the testing, since back in 1992 testing was still not all that completely accurate. Is there anybody else out there who has lived this long with full-blown AIDS?

I was advised early on by my ID doctor to not get caught up with the numbers and don't stress yourself on the numbers. He stated that you'll know what you can do and when to back down and take a break if needed. He also said don't change anything that you don't feel needs to change in your daily life. When I was diagnosed with HISTO and AIDS. I was told I was "full blown" and he explained the medical terminology it was a numbers game and he wasn't concerned about the AIDS as he was the HISTO. Now going on 30 years this April with an AIDS diagnoses for the past 8 years I still do what I can. Today I don't worry about by numbers, don't get me wrong I take a look at them but I don't get concerned. I just continue to move along and remind myself that there are others out there that don't have AIDS that are in a lot worse shape than I'm in and to be grateful. That is how I deal with Living with HIV.

Is there anybody else out there who has lived this long with full-blown AIDS?

technically now that your count is above 200, you don't have AIDS anymore. WooHoo!

However, I will agree with you on the "full-blown" part. Anyone who has been in a hospital with <50 cd4s, VL in the millions, and in the process of nearly dying from an OI, well, those people understand all too well what "full blown" means.

I've been poz for 30 yrs now and it's been 22 yrs since my AIDS diagnosis and like you my cd4s barely hang around the 300 mark. Welcome to our club. According to a POZ article I read back in Sept 2013 (http://www.poz.com/articles/older_and_wiser_2791_24349.shtml), there's only about 50k of us left over from the bad ol' days.

I have thought from the very beginning of this disease and I think more so even now after getting all these definitions and opinions, that it would all be simpler and clearer if the disease was simply called "AIDS". Get rid of the HIV confusion that makes people think you DON'T have it even when you in fact DO. As I see it, you either have the virus or you don't. If you have it, you have AIDS. If you don't have the virus, you don't have AIDS. You either have the virus or you don't. What is the purpose in having all this gray area in between? It especially confuses the public.

I have thought from the very beginning of this disease and I think more so even now after getting all these definitions and opinions, that it would all be simpler and clearer if the disease was simply called "AIDS". Get rid of the HIV confusion that makes people think you DON'T have it even when you in fact DO. As I see it, you either have the virus or you don't. If you have it, you have AIDS. If you don't have the virus, you don't have AIDS. You either have the virus or you don't. What is the purpose in having all this gray area in between? It especially confuses the public.

I have thought from the very beginning of this disease and I think more so even now after getting all these definitions and opinions, that it would all be simpler and clearer if the disease was simply called "AIDS". Get rid of the HIV confusion that makes people think you DON'T have it even when you in fact DO. As I see it, you either have the virus or you don't. If you have it, you have AIDS. If you don't have the virus, you don't have AIDS. You either have the virus or you don't. What is the purpose in having all this gray area in between? It especially confuses the public.

I dont agree with this view.

Some HIV+ people have AIDS - for a few different criteria and/or past histories.

People can easily have untreated HIV today and get AIDS and die.

Many HIV+ people are going to age over decades to come and what they end up with will have little to do with a lot of how "AIDS" was defined for, let's say, the first 20 years of the HIV epidemic.

I am HIV+ but I don't have AIDS.

How does your simplification help matters at all?

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Sure. The virus is called HIV. I have it. Its not killing me and its considered effectively controlled for the long run. What happens when Im 70, we will see. I don't have AIDS. NO medical expert I have seen has ever told me I have AIDS and in fact have taken pains to explain that my experience as HIV+ is not the same as someone who has AIDS or once had AIDS.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

I can see this is going to be hard to sell to those not diagnosed under the current definition as having AIDS. My point is that the virus does not come and go. Once you get the virus, it does not go away. If it went away, then we would have a cure. But we don't have a cure. So there are people in the world who do not have the virus and there are people in the world who do. It is black and white.

I am not using the current definition. I am proposing a new definition. Do not confuse the two.

Mozartian, you are right that it isn't easy to educate the world about the different experiences of being infected with HIV.

You can propose any "new definition" you please. But doctors, public health professionals and epidemiologists don't seem to have a problem with the current use of "HIV+" for people infected with HIV. What happens along the way can be very diverse.

It isn't "black and white" and the way forward is knowledge coming from the experts - on the various prognosis of living with HIV.

One of the themes of the thread is learning to give context to loaded terms as "full-blown AIDS" - to "unpack" its meanings so as to respond psychologically, medically and socially to such terms, and knowing who they apply to, and who they may not apply to.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

I have thought from the very beginning of this disease and I think more so even now after getting all these definitions and opinions, that it would all be simpler and clearer if the disease was simply called "AIDS". Get rid of the HIV confusion that makes people think you DON'T have it even when you in fact DO. As I see it, you either have the virus or you don't. If you have it, you have AIDS. If you don't have the virus, you don't have AIDS. You either have the virus or you don't. What is the purpose in having all this gray area in between? It especially confuses the public.

Morartian,

I am confused on why you resist the distinction between being HIV positive and being diagnosed with AIDS. Historically, an AIDS diagnosis is what you needed to get disability, as being just poz was not considered as sufficient to warrant the payment of disability claims. In the early years, they keep massaging the term "AIDS" until they reached a consensus on what having AIDS really meant in terms of your health. An AIDS diagnosis was also used to allocate federal funds, based on the number of AIDS patients that lived in a given geographical location.

There has always been a method to the madness and to be honest, the designations of poz or AIDS is for the benefit of the patients, doctors and administrators and not the general public.

It is enlightining and gives us great hope for a long survival after reading these posts!! 20, 25 or 30+ years surviving HIV is awesome.. I just hope I can be counted into this group.. I was diagnosed on Aug 13 and started on Stribild on Sept 21...I think it is a marvelous med....My cd4 was 190 (and my Dr. said not to get fixated on that number or the label 'AIDS', she said it will get better I promise and it has!) and VL was 72K... I felt sick really sick only once but had a rapid weight loss which no one could explain!!! Then bam! The bombshell! I am HIV+...It has been difficult and so far I am doing this by myself, alone. I haven't disclosed status to anyone! This solitude is awful, but I am not ready to let the world know...I envy those that have been able to open up! But not all of us are ready! Last doctor visit VL was UD and Cd4 had climbed to 292!!!Thank you all of you for sharing and allow us, newbies, to garner strength and hope!!

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We are all dealing with this. And we will live long and productive lives!!

Hey JosephP. Glad to here the meds are working. I was diagnosed just under 2 years ago and just started with meds 3 weeks ago, so I look forward to my first results in just over 2 months time. I also only found out because I got Meningitis. It was scary at first but I have told partner and a small group of friends and my brother. Everyone has been supportive. I don't believe the whole world needs to know but it is helpful to have people you can lean on, even if you just rely on us here on the forum. All the best.

I think you got the definitions correct . The lines have blurred greatly about what those definitions means to us since the 3 drug combo came about . If you have a CD4 count at or consistently below 300 ish then a prophylaxis is needed to prevent PCP but with the new meds treatment means a pretty quick recovery back to a normal life span with just a little luck .

since I started with a t4 count below 200 are you saying I will always be classified as having AIDs even if count rises above 200? After a year and a half of treatment my vl is undetectable but t4 count still not above 200. Getting close but not there yet. To some it may be a matter of semantics, but reading these posts I find it matters to me.

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A positive attitude may not solve all your problems but it will annoy enough people to make it worthwhile. The point of the journey is not to arrive.

I am wondering the same thing thing as Miss P and would like to know the motivation for the question because it matters .

If the definition is 200 then I have had aids a dozen times with my numbers back and forth from lab to lab . Im not finding fault with asking an honest question just trying to understand . I have said it before ... Aids, hope I never get that again .